Jenny Harlock

Background: This article is by lived experience co-researchers and an academic research team. Co-research involves those with lived experience of a topic under investigation. It is an increasingly popular participatory, beneficial form of co-production that improves the integrity and quality of research, and bridges gaps between academics and participants. Co-researchers can conduct interviews, analyse data and disseminate findings which contributes to meaningful, rich data. However, co-research can engender risk. Co-researchers may lack full integration, leading to isolation and exacerbation of power differentials. Risks are heightened when researching sensitive topics, due to exposure to the narratives of participants and potential re-traumatisation. Our approach: The aim of this article is to share our experiences of co-produced research on a multi-method study of specialist sexual violence services in England. Five co-researchers with lived experience of sexual violence (SV) interviewed victim-survivor participants, conducted data analysis, and were pivotal in dissemination. As part of a novel design, we employed a specialist, lived experience facilitator to support the co-researchers, which complemented that offered by the academic team. Our learning: By evaluating our experience, we highlight the benefits and challenges of co-research. The discussion considers four areas of learning: safety and self-care; empowerment and amplification of voice; accountability and transparency; creativity and joyfulness. Future co-research studies can utilise learning to avoid potential pitfalls and create success. Conclusions: By sharing unique evaluation experiences, this article might benefit academic research teams and lived experience co-researchers considering co-research, particularly on sensitive topics. Key to achieving improvements is the linchpin of a facilitator role.

The specialist voluntary sector (SVS) provides distinctive and much-valued support to victim-survivors of sexual violence. Nevertheless, in England as in other countries, the funding and commissioning landscape in which SVS services are situated is complex and frequently characterised as fragmented and uncertain. In turn, this context unsettles, and sometimes threatens, SVS services’ unique ways of working and their long-term sustainability. Drawing on the concept of boundary spanning, this article reports an interview study with 16 commissioners who had responsibility to commission sexual violence services. We found that commissioners saw themselves as promoting and protecting SVS services, for example through the development of local partnerships, adaptation of commissioning requirements and conventions, and building professional alliances with service leaders. We also found that commissioners worked to broker strategic partnerships with commissioners in other public sector organisations; however, this work was often time-consuming, deeply political and uncertain in its outcomes. This article contributes to the sparse academic literature on the experiences and views of commissioners of SVS sexual violence services. By drawing on the theory of boundary spanning, the article offers a novel way of conceptualising the sophisticated and sometime precarious nature of commissioning practices, including the emotional and political labour required to bring about changes to the commissioning status quo.

Context: Emergency care treatment planning is increasingly required in care homes for residents living with frailty and/or ill-health. ReSPECT (the Recommended Summary Plan for Emergency Care and Treatment) is a type of emergency care treatment plan used widely in UK care homes to guide treatment decisions in medical emergencies when residents are unable to speak for themselves. Objective: To understand care home staff experiences of implementing ReSPECT with residents in their care, and the implications for their role and practice. Methods: Semi-structured interviews were conducted with 31 care home staff from 12 care homes (seven residential, two nursing and three dual-registered) and one care provider group across three diverse areas of England between 2022 and 2023. Interview data were analysed thematically, drawing on Normalisation Process Theory (NPT) constructs. Findings: Care home staff facilitated and coordinated conversations with residents, their families, and health professionals to complete ReSPECT plans, and supported conversations to elicit resident wishes and reach a shared understanding of treatment scenarios. However, care home staff found interpreting ReSPECT recommendations in an emergency challenging and had mixed experiences of implementing recommendations with attending health professionals. Limitations: Self-selecting bias may have influenced findings. Implications: Current ReSPECT guidance for its use in care homes is limited to the role of care home staff in supporting conversations and does not reflect findings regarding their role in actively using plans in an emergency. There is a need for guidance for care home staff to support them in making informed decisions when interpreting ReSPECT plans in an emergency.

Background: There is increasing recognition in England that voluntary sector specialist sexual violence services are essential in providing crisis and longer-term support to victim-survivors. However, there is limited empirical evidence about the scope, range and effectiveness of voluntary sector specialist provision and commissioning, or what victim-survivors want from services. Objectives: Explore victim-survivors’ experiences of accessing and using voluntary sector specialist services. Analyse the range, scope and funding of voluntary sector specialist services and how demand is managed. Explore the usefulness of different approaches to service delivery and different therapy models. Explore how different principles underlying service provision influence service delivery. Investigate referral patterns and pathways, and how voluntary sector specialist services fit with each other and link to the wider network of services for victim-survivors. Explore how arrangements for commissioning and funding services for victim-survivors across health, local authorities and criminal justice have evolved. Develop a taxonomy of the voluntary sector specialist services/service models being commissioned and provided. Make recommendations for the commissioning and provision of voluntary sector specialist services at practice and policy levels. Data sources: Interviews with key stakeholders, focus groups with victim-survivors; a national survey of key stakeholders. Methods: This multimethod study comprised five sequential work packages: work package 1: exploratory interviews with commissioners and providers and focus groups with victim-survivors; work package 2: national survey of service providers and commissioners; work package 3: in-depth case studies in four areas of England; work package 4: co-research with victim-survivors; work package 5: data integration. Co-production was built into the study from its inception through robust patient and public involvement and engagement activities. These included a co-applicant who is a survivor of sexual violence, plus the appointment of five expert-by-experience co-researchers. Results: We captured the combined findings conceptually and diagrammatically into a new model comprising six themes: the complex and precarious funding landscape; the challenge of competition for funding and contracts; the importance and success of partnership working with organisations; the pressured environments within which voluntary sector specialist services work; different roles, scope and eligibility of voluntary and statutory services within an area; and the ways services are organised and delivered, underpinned by services’ values and philosophies. Limitations: The COVID-19 pandemic meant that we were unable to use the proposed methods of data collection for the qualitative components. Mitigation was through developing online modes of data collection. Recruitment to the case study phase did not reach intended thresholds, but rich insights were drawn from earlier phases of the study. Conclusions: The PROSPER study has provided hitherto missing evidence regarding the funding and commissioning of sexual violence services in England. The findings are likely to be useful in informing future commissioning of such services. The PROSPER study has also presented some unexpected opportunities for learning, particularly regarding co-research in the field of sexual violence. We also claim a contribution to theory development through the expansion of a current theoretical framework that may be of use to others working in the specialist voluntary sector. Future work: The model will require development and testing to assess its usefulness as a resource for training and education or as an aid to communications in any interactions that are concerned with the delivery, funding and commissioning of voluntary sector specialist services. Study registration: This study is registered as Research Registry researchregistry5144. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: 18/02/27) and is published in full in Health and Social Care Delivery Research; Vol. 13, No. 10. See the NIHR Funding and Awards website for further award information.

Sexual violence is a global problem with significant individual and societal health and social costs. Services that support victim‐survivors of sexual violence across a range of sectors are crucial. This study investigated the scope, range, funding and commissioning of voluntary sector specialist (VSS) sexual violence services in England and victim‐survivors’ experiences of using such services. The specialist voluntary sector plays a pivotal role in providing crisis and longer‐term support to victim‐survivors. However, there is limited empirical evidence about the scope, range and use of VSS provision, or what victim‐survivors value and want from services. The aim of the study was to address this gap and provide much‐needed evidence to inform the VSS sector nationally. This co‐produced study included five co‐researchers and one co‐applicant with lived experience of sexual violence. There were three empirical phases: (1) exploratory interviews with commissioners and service providers and focus groups with victim‐survivors; (2) national survey of service providers and commissioners; (3) in‐depth case study analysis in four areas of England. The purpose of this paper is to synthesise the findings from each of these phases and map them onto a conceptual model, encompassing six themes: the complex and precarious funding landscape; the challenge of competition for funding and contracts; the role of partnership working; the pressured environments within which VSS services work; the different roles, scope and eligibility of voluntary and statutory services within an area; the ways services are delivered, underpinned by services’ values and philosophies. The study provides new, empirical insights into how these arrangements affect those connected with the services—namely, staff, volunteers and victim‐survivors. The paper sets out 14 recommendations for all parties involved in the funding and commissioning of specialist services, including commissioners, grant funders and VSS organisations in England.

Background The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) is designed to facilitate meaningful discussions between healthcare professionals, patients, and their family about preferences for treatment in future medical emergencies. People with a learning disability may face particular barriers in completing health care plans and receiving emergency treatment, however little is known about their preferences towards emergency care treatment planning. This study explores the views of people with a learning disability, and family carers about ReSPECT. Methods A reference group of 5 people with a learning disability contributed to the design of the workshops and evaluation of outputs. Online, arts-based interactive workshops were held with 2 groups of 6 people with a learning disability to explore how they felt about emergency care treatment planning, and to co-produce materials to support ReSPECT conversations. Carers of people with a learning disability participated in focus groups or interviews. Data from workshops, focus groups and interviews were analysed thematically. Results Themes were; Getting the Process Right, Lack of trust a barrier to ReSPECT planning, and Person-Centred Care. All groups supported the ReSPECT process feeling that ReSPECT plans could support person-centred care, enhancing the autonomy of a person with a learning disability and supporting the advocacy of carers. However, drawing on their previous experiences of the health care system some expressed doubt that their wishes would be carried out. Suggestions were made for improving the ReSPECT process and used to develop resources to support ReSPECT planning. Conclusions Emergency care planning and ReSPECT are viewed positively by people with a learning disability and family carers. To ensure this works well for people with a learning disability attention should be given to reasonable, personalised adjustments to support their participation in planning conversations. There is a wider challenge of fostering trust in the health care system.

Background: Emergency care treatment plans provide recommendations about treatment, including cardiopulmonary resuscitation, to be considered in emergency medical situations. In 2016, the Resuscitation Council United Kingdom developed a standardised emergency care treatment plan, the recommended summary plan for emergency care and treatment, known as ReSPECT. There are advantages and potential difficulties in initiating the ReSPECT process in primary care. Hospital doctors and general practitioners may use the process differently and recommendations do not always translate between settings. There are no large studies of the use of ReSPECT in the community. Study aim: To evaluate how, when and why ReSPECT is used in primary care and what effect it has on patient treatment and care. Design: A mixed-methods approach using interviews, focus groups, surveys and evaluation of ReSPECT forms within an analytical framework of normalisation process theory. Setting: A total of 13 general practices and 13 care homes across 3 areas of England. Participants: General practitioners, senior primary care nurses, senior care home staff, patients and their relatives, community and emergency department clinicians and home care workers, people with learning disability and their carers. National surveys of (1) the public and (2) general practitioners. Results: Members of the public are supportive of emergency care treatment plans. Respondents recognised benefits of plans but also potential risks if the recommendations become out of date. The ReSPECT plans were used by 345/842 (41%) of general practitioner survey respondents. Those who used ReSPECT were more likely to be comfortable having emergency care treatment conversations than respondents who used standalone ‘do not attempt cardiopulmonary resuscitation’ forms. The recommended summary plan for emergency care and treatment was conceptualised by all participants as person centred, enabling patients to have some say over future treatment decisions. Including families in the discussion is seen as important so they know the patient’s wishes, which facilitates decision-making in an emergency. Writing recommendations is challenging because of uncertainty around future clinical events and treatment options. Care home staff described conflict over treatment decisions with clinicians attending in an emergency, with treatment decisions not always reflecting recommendations. People with a ReSPECT plan and their relatives trusted that recommendations would be followed in an emergency, but carers of people with a learning disability had less confidence that this would be the case. The ReSPECT form evaluation showed 87% (122/141) recorded free-text treatment recommendations other than cardiopulmonary resuscitation. Patient preferences were recorded in 57% (81/141). Where a patient lacked capacity the presence of a relative or lasting power of attorney was recorded in two-thirds of forms. Limitations: Recruitment for patient/relative interviews was less than anticipated so caution is required in interpreting these data. Minority ethnic groups were under-represented across our studies. Conclusions: The aims of ReSPECT are supported by health and social care professionals, patients, and the public. Uncertainty around illness trajectory and treatment options for a patient in a community setting cannot be easily translated into specific recommendations. This can lead to conflict and variation in how recommendations are interpreted. Future work: Future research should explore how best to integrate patient values into treatment decision-making in an emergency. Study registration: This study is registered as NCT05046197. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR131316) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 42. See the NIHR Funding and Awards website for further award information.

Background: The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) has been implemented in many areas of the UK. It is unclear how ReSPECT is used in primary and community care settings. Aim: To investigate how the ReSPECT process is understood and experienced in the community by clinicians, social care staff, patients, their relatives, and identify obstacles and enablers to its implementation. Design and setting: A qualitative interview and focus-group study across 13 general practices in three areas of England, between January and December 2022. Method: We interviewed GPs, specialist nurses, patients and relatives, and senior care home staff. Focus groups were conducted with community nurses, paramedics, and home care workers. Questions focused on understanding experiences of, and engagement with, ReSPECT. We analysed data using thematic analysis and a coding framework drawn from normalisation process theory. Results: Participants included n = 21 GPs, n = 5 specialist nurses, n = 9 patients, n = 7 relatives, n = 31 care home staff, n = 9 community nurses, n = 7 home care workers, and n = 2 paramedics. Participants supported ReSPECT, regarding it as a tool to facilitate person-centred care. GPs faced challenges in timing the introduction of ReSPECT and ensuring sufficient time to complete plans with patients. ReSPECT conversations worked best when there was a trusting relationship between the clinician and the patient (and their family). Anticipating future illness trajectories was difficult, yet plans were rarely reviewed. Interpreting recommendations in emergencies was challenging. Conclusion: The ReSPECT process has not translated as well as expected in the community setting. A revised approach is needed to address the challenges of implementation in this context.

Background The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) is designed to facilitate meaningful discussions between healthcare professionals, patients, and their family about preferences for treatment in future medical emergencies. People with a learning disability may face particular barriers in completing health care plans and receiving emergency treatment, however little is known about their preferences towards emergency care treatment planning. This study explores the views of people with a learning disability, and family carers about ReSPECT. Methods Online, arts-based interactive workshops were held with people with a learning disability to explore how they felt about emergency care treatment planning, and to co-produce materials to support ReSPECT conversations. Carers of people with a learning disability participated in focus groups or interviews. Data from workshops, focus groups and interviews were analysed thematically. Results Themes identified were: Getting the Process Right, Lack of trust as a barrier to ReSPECT planning, and Person-Centred Care. All groups supported the ReSPECT process. They felt that ReSPECT plans could support person-centred care, enhancing the autonomy of a person with a learning disability and supporting the advocacy of carers. However, drawing on their previous experiences of the health care system some expressed doubt that their wishes, as reflected in the recommendations, would be carried out. Suggestions were made for improving the ReSPECT process for people with a learning disability and used to develop resources to support ReSPECT planning. Conclusions Emergency care planning and ReSPECT are viewed positively by people with a learning disability and family carers. To ensure this works well for people with a learning disability attention should be given to reasonable, personalised adjustments to support their participation in planning conversations. There is a wider challenge of fostering trust in the health care system regarding treatment of people with a learning disability.

Background: A holistic approach to emergency care treatment planning is needed to ensure that patients’ preferences are considered should their clinical condition deteriorate. To address this, emergency care and treatment plans (ECTPs) have been introduced. Little is known about their use in general practice. Aim: To find out GPs’ experiences of, and views on, using ECTPs. Design & setting: Online survey of GPs practising in England. Method: A total of 841 GPs were surveyed using the monthly online survey provided by medeConnect, a market research company. Results: Forty-one per cent of responders' practices used Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) plans for ECTP, 8% used other ECTPs, and 51% used Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) forms. GPs were the predominant professional group completing ECTPs in the community. There was broad support for a wider range of community-based health and social care professionals being able to complete ECTPs. There was no system for reviewing ECTPs in 20% of responders’ practices. When compared with using a DNACPR form, GPs using a ReSPECT form for ECTP were more comfortable having conversations about emergency care treatment with patients (odds ratio [OR] = 1.72, 95% confidence interval [CI] = 1.1 to 2.69) and family members (OR =1.85, 95% CI = 1.19 to 2.87). Conclusion: The potential benefits and challenges of widening the pool of health and social care professionals initiating and/or completing the ECTP process needs consideration. ReSPECT plans appear to make GPs more comfortable with ECTP discussions, supporting their implementation. Practice-based systems for reviewing ECTP decisions should be strengthened.